You may have never heard of it, but thoracic outlet syndrome, or TOS for short, can cause severe and debilitating pain. The condition is often misdiagnosed, but if it's caught, treatment can make all the difference. We introduce you to one woman who says surgery saved her life.
Six months ago, Amy Leach wasn't able to work outside, or even make her bed.
"I couldn't breathe well," Amy Leach told Ivanhoe, "I was lightheaded all the time. I had no energy."
It all started after a car accident 27 years ago. Amy broke her neck and ribs, which sent her down a long road to recovery. But three years ago, she started experiencing intense pain in her arm and body that wouldn't go away
"Every single day was just an absolute struggle to get through," said Leach.
Doctor after doctor got it wrong, until Amy was finally diagnosed with thoracic outlet syndrome, or TOS. It often happens to people who've suffered an injury or perform repetitive motions.
"And what happens is that the artery, vein and or nerve are compressed as it comes out of the arm into the hand," Julie Freischlag, M.D., Board-Certified Vascular Surgeon, Dean of the School of Medicine and Vice Chancellor for Human Health Sciences at UC Davis told Ivanhoe.
Up to 70-percent of patients with TOS that affects nerves can find relief with physical therapy. But Amy needed surgery. Doctors removed a muscle in her neck along with her first rib. 18 hours after the procedure, Amy was pain-free!
"I broke down and just wept because it was finally relief," Leach told Ivanhoe.
Now Amy can climb, clip and pull without any pain.
"It's just unbelievable," said Leach, "I mean, I truly, truly have my life back."
Nerve-related TOS like Amy's, is often misdiagnosed because it mimics other orthopedic problems. Athletes and those who've experienced trauma are more likely to suffer from it. UC Davis has one of the only clinics in the country that specializes in diagnosing and treating TOS.
BACKGROUND: Thoracic outlet syndrome (TOS) is a group of disorders that occur when compression, injury, or irritation of the nerves and/or blood vessels (arteries and veins) occur in the lower neck and upper chest area. The thoracic outlet is located between the lower back and upper chest in which a grouping of blood vessels and nerves are found. TOS can be caused by an extra first rib (cervical rib) or an old collarbone fracture that reduces the space for the vessels and nerves. Abnormalities in bony and soft tissue can also cause TOS. Symptoms of TOS include neck, shoulder, and arm pain, as well as numbness and poor circulation to affected areas.
TYPES OF TOS: There are three types of TOS with differentiating symptoms. Neurogenic thoracic outlet syndrome is related to abnormalities of bony and soft tissue in the lower neck region (which may include the cervical rib area) that compress and irritate the complex of nerves that supply motor and sensory function to the arm and hand. Symptoms include weakness or numbness of the hand; decreased size of hand muscles, which usually occurs on one side of the body; and/or pain, tingling, prickling, numbness and weakness of the neck, chest, and arms. Venous thoracic outlet syndrome is caused by damage to the major veins in the lower neck and upper chest. It can develop suddenly, often after unusual and tiring exercise of the arms. Symptoms include swelling of the hands, fingers and arms, as well as heaviness and weakness of the neck and arms. The front chest wall veins also may appear swollen. Arterial thoracic outlet syndrome is the least common, but most serious type of TOS caused by bony abnormalities, present at birth, in the lower neck and upper chest. Symptoms include cold sensitivity in the hands and fingers; numbness, pain or sores of the fingers; and poor blood circulation to the arms, hands and fingers.
TREATMENT OPTIONS: Treating TOS can include one or more of the following options. Physical therapy is the first line of treatment for patients with neurogenic TOS; this allows improvement in the range of motion and posture by strengthening and stretching shoulder muscles to open the thoracic outlet. Anti-inflammatory, pain or muscle relaxing medications can reduce pain. Surgery is an option if a surgeon needs to remove a rib to reduce pressure to the thoracic outlet, or removing muscle(s) to relieve compressed blood vessels. A surgeon trained in thoracic (chest) or vascular (blood vessel) surgery will typically perform the procedure.
FOR MORE INFORMATION ON THIS REPORT, PLEASE CONTACT:
UC Davis Vascular Center
Julie Freischlag, M.D., Board-Certified Vascular Surgeon, Dean of the School of Medicine and Vice Chancellor for Human Health Sciences at UC Davis, talks about treating those with thoracic outlet syndrome.
Interview conducted by Ivanhoe Broadcast News in October 2014.
What is T.O.S.?
Dr. Freischlag: Thoracic outlet syndrome is a constellation of symptoms in patients who have either undergone an injury or have had an occupation or hobby that involves chronic repetitive motion. What happens is that the artery, vein and/or nerve are compressed as they come out of the arm into the hand. The compression is up by the first rib, which is right underneath the collarbone; Compression of the nerve is the most common type, where they get numbness, tingling, and clumsiness or difficulties doing activity with their arm. Or it can compress the vein which can lead to thrombosis or clotting, which can cause acute swelling in the arm and inability to use the arm. Most rarely it can irritate the artery, causing either clots to form to go down into the hand or chronic compression that leads to an aneurysm that's more distal to where the rib is. An aneurysm is dilatation of the artery, which can again lead to clotting at the site of compression or further down into the hand.
A lot of time it goes on for years and it's not diagnosed?
Dr. Freischlag: The neurogenic form of the disease affects the nerve and can go on for a long time because there are no real diagnostic tests that can help us tell that it is thoracic outlet syndrome. Most times, people will have symptoms for a couple years before it's identified through a thorough physical exam. The venous form of the disease causes clots and acute swelling and is easier to diagnose. The same with the arterial form of the disease, as patients will come in without a pulse in their hand. The one that's really hard to diagnose is the neurogenic.
And the neurogenic, what would that be mistaken for?
Dr. Freischlag: Sometimes people don't believe thoracic outlet syndrome symptoms at all. Patients come in to their physicians' offices saying they have numbness and tingling and difficulty doing their activities and many times they've been involved in an accident. If they've been in a motor vehicle accident there could be some litigation going on, and therefore physicians might wonder whether or not the symptoms are real. For those with chronic repetitive motion, they may have to leave work and may be workers' compensation patients. Again, there's the suspicion whether or not there's secondary gain. These people come in with their lives disrupted, and they can't do what they want to do; they perhaps can't work and have chronic pain and discomfort, and therefore they're very frustrated. These patients tend to be younger, probably in their early 30s, many of them are women, probably 60 to 70 percent of them, and their doctors may not believe them. They might wonder whether or not these patients have ulterior motives.
Traditionally how would doctors treat them?
Dr. Freischlag: Initially, physicians would do a history, physical and preclinical X-rays, which would all be normal. Sometimes they will even do nerve conduction studies and those EMGs (electromyographies) would also be normal. They might look for either carpal tunnel, which is compression in the wrist, or cervical spine disease. They will find nothing wrong because most of the tests will be normal. They may put them in physical therapy; they may give them some pain medication. Many times they sort of dismiss the symptoms and tell them to go back to work. It's only when this fails or when symptoms persist for a couple years that patients end up being referred to a vascular specialist.
How do you treat these patients?
Dr. Freischlag: Initially, we'll assess the patients too because 60 to 70 percent will get better with a thoracic outlet specific physical therapy program. The first time we meet them, we'll do our exam. We do a great history to find out if they have chronic repetitive motion or an injury. We'll do an exam to see if they have a tender scalene muscle in their neck. They may actually have numbness and tingling when they put their arms above their head when doing an elevated stress test. Or they will have a decreased pulse. We also listen right underneath the collarbone, where you can hear a little noise as the artery gets compressed a bit. When we've finished our exam, we can be pretty sure if a patient has it or not. Most people are really expertly referred. Many physicians now recognize thoracic outlet syndrome, and patients themselves recognize it because they go online and are able to find the diagnosis. We'll first treat them with physical therapy for eight weeks, if they have not already had that therapy. Again, 60 to 70 percent will get better. The physical therapy works to get the shoulders back, open up the shoulders, strengthen the muscles, massage muscles that may have been inflamed by an accident or chronic repetitive motion and most patients can then go back to work. The ones with venous thoracic outlet syndrome we have to operate on. If they have a venous clot we have to take out the first rib and anterior scalene muscle and open up the vein with a venogram with a balloon. And the arterial ones need acute intervention because they could have blood clots in their hand and that can be serious. They need to go right into surgery. But the neurogenic ones can be treated conservatively.
Can you tell me a little bit about Amy and how you took a rib?
Dr. Freischlag: Sure. If patients fail to get better with physical therapy then they need surgery, and frequently we can do that with a transaxillary approach. We put an incision underneath the arm, we remove the first rib which is compressing the artery, vein or nerve and then we also remove the anterior scalene muscle. In her case, she probably had a previous fracture of that area, and so there was a lot of inflammation. The bone had some deformity to it as well and was actually pushing right on her nerve. She had been in a pretty major accident and had a bunch of other life-threatening injuries. It's not unusual that this would manifest itself a couple years later, because they were fixing everything else.
Is there a lot of recovery from cutting away some muscle and cutting away the rib?
Dr. Freischlag: Not much. What we do is put patients in physical therapy before so they know what to expect afterwards. After the surgery, the shoulder may rotate a little bit anteriorly, and they need to do physical therapy two weeks after surgery to get their shoulder strength back. The biggest problem is haven't been doing much for a few years, so they're really a bit debilitated and weak. Getting their strength back can take anywhere from two to three to six months. We tell them it may take a whole year to get all of their strength back. But they will notice incremental improvement of about 10 percent every month.
How many people do you think are suffering from this but don't know?
Dr. Freischlag: Probably a lot. I have a little thoracic outlet but it doesn't bother me. It doesn't interfere with my day-to-day life. But if I move things or go on a big trip, I'll have some numbness and tingling. I had broken a collarbone years ago, so I'm really conscious about having good posture and exercising. I think there are a lot of people like that and fewer people that are totally disabled by this condition. We are getting a little bit more publicity about the symptoms. It's on websites people can read about it. We've published a lot about it. People know that it is indeed an entity and that they can be treated. Also we've educated primary care doctors. We did a study looking at referrals from not only physicians but patients too and over 90 percent of the people who see us really have the disease.
Now you have one of the first and only clinics that are specifically for this.
Dr. Freischlag: Yes it is. And we actually had one where I was before coming here (UC Davis). There is certainly a need in this area, because there isn't someone specializing in this diagnosis and treatment. The best thoracic outlet syndrome doctors treat a lot of patients, because it is pretty rare. If you only see one or two a year you really can't put them on the spectrum of severity of illness. If you see hundreds of them, then you can. Prior to coming to UC Davis, I was seeing six to eight new patients a week and we operated on over 530 patients and took out about 600 ribs. Here we're just starting to see about two to four new patients a week, but we'll see more as well when people refer patients. We'll be able to diagnose them, decide whether they need surgery or not, put them in appropriate physical therapy protocols and give them expectations that they can manage. You don't get better the day after surgery — they need to understand that — and it may take weeks or months until they feel totally better. There is a chance the physical therapy will make it better, and that's okay. Not everyone needs a rib resection.
Well Amy believes that she was cured immediately.
Dr. Freischlag: She was. Now she was unusual in the sense that her rib probably had been broken in an accident. She had a big section of bone that was pushing right on the nerve, and it was hard to get her rib out because of it. She's a little different in that most people with accidents just have muscle spasms. She also was a very resilient patient and she kept working and doing things, so she was not very disabled when we saw her. Even though it hurt and bothered her, she kept doing things and exercising. Those types of patients actually get better fast.
This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.